i have never said this to anyone.
i have a rare disease, not like cancer cells, or anything like that. but, if left untreated, im going to die before 60.
My doctor didn't understand it, he looked at the X-rays, he told me what he saw, but he had never seen it before in a young person, and the common thought of im still growing it will heal led him to tell me there was nothing wrong...
my whole life ive been told my doctors that something is wrong, my parents were to stupid, this could have all been stopped if caught early. but nobody seemed to say hey, this kid doesnt understand he has a rare disease.
I have 2 diseases i guess. one led to the other...
I have Degenerative Disc Disease. its usually seen in old people, who start to follow apart, and they stay bent over because theyre back is in pain....
Except the way my discs have degenerated, i meet the exact requirements for schuermans disease, i am legally disabled, and i have been in pain my whole life and it has ruined me.
there is no way i could ever communicate the pain i feel to you. So your understanding of the situation is limited.
My condition, requires surgery. my back grew more on the back than the inner part, making my spine curve, the only way to fix this is excersize, but that only gives support to put it in the right position. I work out alot. about 6 days a week sometimes am/pm. Its helping, but I have to get surgery, and the surgery requires my entire back to be taken apart, install new man made discs break the back bone, fuse it back together then put steal rods running through my entire back...
my spine curves in my mid back, though not as bad at the shoulders, the mid back is so curved in, its pressing against my organs and nerves, sending peircing pain throughout my body. sometimes i leave school, work, church, and i have to go find a tree and do pull ups and chin ups.
the worst part about this disease, the cause is unkown, but "children are not able to realize their posture throughout their life, they can not mentally controll the way the stand sit if not paying attention. its like going to reach for something, and then when you get it, you never sit back up, and then you sit like that till you have pain in your back and move again.
They have no idea why this happens. I have noticed a big improvement since working out, and when the pain is not there (rarely) You can't notice anything wrong with me.
Im Going to my doctor monday. This disease gets worse over time. if i was 15 they could have given me a brace and other crap, but its too late now. life ruined.
about 90% of patients who have SChuermans disease have chronic pain that causes them to lose jobs, marriage, and so on. Most of them are prescribed pain medications, If the full requirements are met, surgery is required. Most patients are prescribed opiates, Valium, Xanax, siezure meds (all nerve blocking) Soma (muscle relaxer, and valium is) and anti depressants because of the low self esteem from literally not physically being able to stand up straight) how would you feel if you couldn't stand up straight, you were permanently fixed falling forward, and moving into a normal position, is like getting hit in the back with a baseball bat.
Oh did i mention they will probably have to give me steroids too.
The bat strikes as i type this, I can't sit in my chair long because it hurts, i cant sleep i cant sit at a desk.
In the past 8 years, (besides my heroin binge) i have been in constant pain. I deal with it, i don't ever talk about it, and it afflicts me even now as I type.
My doctor is a good doctor, he's not going to ruin my life with pain meds (but honestly, without surgery, im a cancer pateint waiting to die) so maybe pain pills will just ease my death.
But the other doctor suggested (when i told him that I will lose a job or get kicked out of a class, just to lie for a couple hours) he told me that I need some sort of pain pills.
There is this new doctor in michigan, that injects stuff all into your back, it causes scar tissue, which in turn pushes your spine apart.
The summary: I have the back of a 70 year old women. Without surgery, in 25 years, I will be bed-bound, unable to breathe and in a pain that makes suicide look enticing.
Im clean from pain meds, well i was, up until 2 days ago, when i lifted a fridge into my truck, and felt a snap of something deep in my lungs. now it feels like something is stabbing my lung from behind.
fuck.
here is a pic of what a case looks like and the surgery involved
working out has helped,
heres a video of how i am going to become robo-cop
http://www.youtube.com/watch?v=3UEh9...eature=related
My doctor didn't understand it, he looked at the X-rays, he told me what he saw, but he had never seen it before in a young person, and the common thought of im still growing it will heal led him to tell me there was nothing wrong...
my whole life ive been told my doctors that something is wrong, my parents were to stupid, this could have all been stopped if caught early. but nobody seemed to say hey, this kid doesnt understand he has a rare disease.
I have 2 diseases i guess. one led to the other...
I have Degenerative Disc Disease. its usually seen in old people, who start to follow apart, and they stay bent over because theyre back is in pain....
Except the way my discs have degenerated, i meet the exact requirements for schuermans disease, i am legally disabled, and i have been in pain my whole life and it has ruined me.
there is no way i could ever communicate the pain i feel to you. So your understanding of the situation is limited.
My condition, requires surgery. my back grew more on the back than the inner part, making my spine curve, the only way to fix this is excersize, but that only gives support to put it in the right position. I work out alot. about 6 days a week sometimes am/pm. Its helping, but I have to get surgery, and the surgery requires my entire back to be taken apart, install new man made discs break the back bone, fuse it back together then put steal rods running through my entire back...
my spine curves in my mid back, though not as bad at the shoulders, the mid back is so curved in, its pressing against my organs and nerves, sending peircing pain throughout my body. sometimes i leave school, work, church, and i have to go find a tree and do pull ups and chin ups.
the worst part about this disease, the cause is unkown, but "children are not able to realize their posture throughout their life, they can not mentally controll the way the stand sit if not paying attention. its like going to reach for something, and then when you get it, you never sit back up, and then you sit like that till you have pain in your back and move again.
They have no idea why this happens. I have noticed a big improvement since working out, and when the pain is not there (rarely) You can't notice anything wrong with me.
Im Going to my doctor monday. This disease gets worse over time. if i was 15 they could have given me a brace and other crap, but its too late now. life ruined.
about 90% of patients who have SChuermans disease have chronic pain that causes them to lose jobs, marriage, and so on. Most of them are prescribed pain medications, If the full requirements are met, surgery is required. Most patients are prescribed opiates, Valium, Xanax, siezure meds (all nerve blocking) Soma (muscle relaxer, and valium is) and anti depressants because of the low self esteem from literally not physically being able to stand up straight) how would you feel if you couldn't stand up straight, you were permanently fixed falling forward, and moving into a normal position, is like getting hit in the back with a baseball bat.
Oh did i mention they will probably have to give me steroids too.
The bat strikes as i type this, I can't sit in my chair long because it hurts, i cant sleep i cant sit at a desk.
In the past 8 years, (besides my heroin binge) i have been in constant pain. I deal with it, i don't ever talk about it, and it afflicts me even now as I type.
My doctor is a good doctor, he's not going to ruin my life with pain meds (but honestly, without surgery, im a cancer pateint waiting to die) so maybe pain pills will just ease my death.
But the other doctor suggested (when i told him that I will lose a job or get kicked out of a class, just to lie for a couple hours) he told me that I need some sort of pain pills.
There is this new doctor in michigan, that injects stuff all into your back, it causes scar tissue, which in turn pushes your spine apart.
The summary: I have the back of a 70 year old women. Without surgery, in 25 years, I will be bed-bound, unable to breathe and in a pain that makes suicide look enticing.
Im clean from pain meds, well i was, up until 2 days ago, when i lifted a fridge into my truck, and felt a snap of something deep in my lungs. now it feels like something is stabbing my lung from behind.
fuck.
here is a pic of what a case looks like and the surgery involved
working out has helped, heres a video of how i am going to become robo-cop
http://www.youtube.com/watch?v=3UEh9...eature=related
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